What guidance exists to support patient partner compensation practices? A scoping review of available policies and guidelines

Abstract Background An integral aspect of patient engagement in research, also known as patient and public involvement, is appropriately recognising patient partners for their contributions through compensation (e.g., coauthorship, honoraria). Despite known benefits to compensating patient partners, our previous work suggested compensation is rarely reported and researchers perceive a lack of guidance on this issue. To address this gap, we identified and summarised available guidance and policy documents for patient partner compensation. Methods We conducted this scoping review in accordance with methods suggested by the JBI. We searched the grey literature (Google, Google Scholar) in March 2022 and Overton (an international database of policy documents) in April 2022. We included articles, guidance or policy documents regarding the compensation of patient partners for their research contributions. Two reviewers independently extracted and synthesised document characteristics and recommendations. Results We identified 65 guidance or policy documents. Most documents were published in Canada (57%, n = 37) or the United Kingdom (26%, n = 17). The most common recommended methods of nonfinancial compensation were offering training opportunities to patient partners (40%, n = 26) and facilitating patient partner attendance at conferences (38%, n = 25). The majority of guidance documents (95%) suggested financially compensating (i.e., offering something of monetary value) patient partners for their research contributions. Across guidance documents, the recommended monetary value of financial compensation was relatively consistent and associated with the role played by patient partners and/or specific engagement activities. For instance, the median monetary value for obtaining patient partner feedback (i.e., consultation) was $19/h (USD) (range of $12–$50/h). We identified several documents that guide the compensation of specific populations, including youth and Indigenous peoples. Conclusion Multiple publicly available resources exist to guide researchers, patient partners and institutions in developing tailored patient partner compensation strategies. Our findings challenge the perception that a lack of guidance hinders patient partner financial compensation. Future efforts should prioritise the effective implementation of these compensation strategies to ensure that patient partners are appropriately recognised. Patient or Public Contributions The patient partner coauthor informed protocol development, identified data items, and interpreted findings.


| INTRODUCTION
It is crucial to create a supportive and respectful environment for engagement in research.This helps ensure that all team members, including patient partners, can contribute fully to discussions and decisions. 1A specific approach to supporting patient partners is the provision of compensation (defined here as offering something of monetary value, goods or services in exchange for engagement; definitions can be found in Box 1). 8The compensation of patient partners for their contributions to health research is important for ethical and practical reasons. 2,9,10First, compensation demonstrates fairness.
Researchers receive professional or academic recognition for their work, yet similar acknowledgements may not always be meaningful to patient partners.2][13] Second, financial compensation can facilitate the participation of individuals who may not have the economic means to be engaged in research. 9,12Third, compensation facilitates an inclusive environment that encourages patient partners to freely share their perspectives and maximises the impacts of their engagement. 10veral organisations have now developed guidance documents to support the compensation (nonfinancial and financial) of patient partners in research.These include the National Institute for Health and Care Research in the United Kingdom, as well as the Strategy for Patient-Oriented Research (SPOR) in Canada. 2,14,15spite the availability of guidance, in a recent systematic review, we found that only a small fraction of studies reported offering financial compensation. 16In a follow-up survey of researchers and their institutional representatives, participants reported a perceived lack of policy and guidance around compensation, both of which served as barriers to providing patient partner compensation.It thus appears that, despite known benefits to compensating patient partners, and the availability of guidance, awareness of guidance is limited.Alternatively, the available guidance may not be serving the needs of researchers to support the compensation of patient partners.
A synthesis of available guidance and policy documents would assist researchers in making informed decisions regarding the compensation of patient partners.It may also identify areas of inconsistency that could explain varied uptake and point to a need for further consolidated guidance.At present, no such synthesis of guidance exists.
To address this gap, we undertook a scoping review to identify and synthesise existing policies and guidance documents for patient partner compensation.Our overarching research question was, 'What guidance or policies exist to inform patient partner compensation in research, and how do they compare?'Evidence Sources included articles, documents or policies that provide information on processes or recommendations on patient partner compensation, but there were no restrictions on author type (e.g., organisations, research teams, patient partners).This represents an expanded approach from the published protocol, 7 but was driven by a recognition that patient perspectives or experiences may not be reflected in official organisational or institutional documents.It also allowed us to cast a wide net and capture a range of perspectives on the topic of patient partner compensation.We excluded documents that solely reported activity or where the aim was not to provide guidance (e.g., meeting minutes, annual reports).
Participants were not applicable.However, the Concept was the compensation of patient partners in their role as research team members, consultants, or members of steering/advisory/grant review committees (i.e., patient partners).Patient partners were defined as individuals with lived experience of a health condition, including informal caregivers, members of the public, friends and family, who work with researchers to inform, develop or conduct research. 5We defined 'compensation' as offering goods or services, nonfinancial and financial, in exchange for engagement in research.We excluded documents that solely described compensation of patients for their role as research participants.
Context was patient engagement in health research, which refers to meaningful and active collaboration with patients in governance, priority setting, conduct or knowledge translation from a research activity. 1While we use the term patient engagement here, terms such as patient consultation or patient and public involvement may be used depending on jurisdiction. 21,22There were no restrictions on the setting of patient engagement in research (e.g., clinical, health policymaking, preclinical) or stage of research (e.g., priority setting, study design, data collection, data analysis, dissemination).

| Information sources and literature search
In line with expanding the scope of the review, we used additional searching strategies to our formal search of policy documents.

Reimbursement
Reimbursement of out-of-pocket expenses from engagement that are necessary to enable an individual to be engaged as a patient partner (travel, accommodations, parking, meals, child-care support or personal health care devices such as supplemental oxygen for a plane trip). 2 Reimbursement is not a form of recognition/appreciation/ compensation because patient partners should not pay out-ofpocket to be engaged in research. 2tient partner Individuals with lived experience of a health condition and informal caregivers, including family and friends. 5

Patient engagement in research
The inclusion of patients as partners in the research process.Here, research is conducted 'with' patients, rather than 'on' patients.For example, patient partners can be actively engaged in governance, priority setting, developing the research questions and even performing certain parts of the research itself. 5,6mpensation Demonstrating appreciation of patient partner time, expertise and involvement in research as a partner.This includes offering something of monetary value, goods or services in exchange for engagement.Compensation can take on one of two forms: nonfinancial compensation and financial compensation. 3,4,7nfinancial compensation Offering gifts, tokens of appreciation, opportunities or services in exchange for patient partnership on a research project.For example, this could be coauthorship on manuscripts or research material, facilitating patient partner attendance at a conference, education, or gifts (token of appreciation e.g., flowers, care package, gift card). 3,4,7nancial compensation Financial compensation extends beyond the partner's reimbursement for out-of-pocket expenses and includes offering payment or something of monetary (Continues) Term Definition value in exchange for their engagement.For example, this could be honoraria, cash or salary (formal payroll). 3,4,7fts or gift cards (for grocery stores, restaurants, retail stores, prepaid visa gift cards etc.) are considered financial compensation when the value is informed by a formal conversion (e.g., 2 h of work at 25$ per hour = $50 gift or gift card value) or patient partners decide that they want to receive payment in the form of gifts or gift cards.
Our previous systematic review identified 316 papers in which patient partner recognition was discussed; within this sample of papers 91% reported offering compensation to patient partners. 16From these 316 studies, we extracted any reported guidance or policy documents that were used to help authors develop a patient partner compensation strategy.These referenced guidance or policy documents were retrieved and reviewed against the present eligibility criteria for consideration of inclusion in the present scoping review.In addition, we included any institutional or policy guidance documents that were suggested as part of a survey of authors and institutions about compensation practices. 8,16This initial corpus of documents was supplemented with a search of repositories for guidance and policy documents.We searched Overton.io, the largest international database of policy documents, on 5 April 2022. 23We

| Data charting
We uploaded the included documents to Distiller SR (Evidence Partners Incorporated), a cloud-based software that supports reproducible work necessary for a scoping review.Two independent reviewers (G.F. and A. S.) extracted data using a standardised form with 59 data elements.Reviewers performed two pilot exercises on 10 documents until conflicts between reviewers were below five per document.Reviewers consulted a third party (M.M. L. and D. A. F.) if they could not reach a consensus.

| Data items
We extracted document characteristics (e.g., source organisation, year of publication, country of origin, target audience), recommended methods of compensation (nonfinancial and financial methods), and financial compensation details (monetary amount, payment frequency).Gift cards were categorised as financial compensation when their value was explicitly tied to time provided and involved a formal calculation based on a pro-rated amount (e.g., 2 h of work at $25/h = $50 gift or gift card value) or patient partners decide that they want to receive payment in the form of gift cards.In contrast, when gift cards were provided as a token of appreciation (i.e., no formal conversion took place) they were categorised as nonfinancial compensation.Additionally, we extracted (verbatim) items to consider when offering financial compensation as well as reported benefits, challenges, barriers, and enablers.All monetary amounts were converted to USD based on conversion rates on 5 September 2022.A complete list of data items can be found in Supporting Information S1: Appendix 3.

| Synthesis of results
We presented document characteristics and recommendations (e.g., source document type, recommended methods of compensation, compensation details) descriptively.Two reviewers independently extracted verbatim statements of benefits, challenges, barriers and enablers to patient partner financial compensation.Following extraction, each reviewer independently read the extracted statements and inductively generated overarching themes (i.e., benefits, challenges, barriers, enablers and items to consider).All themes were tabulated and grouped through a process of data reduction.Any conflicts were resolved by reviewers.Overarching themes and frequency of reporting were presented to the entire team for feedback.We then narratively synthesized the overarching themes.

| Patient engagement
A patient partner (M.S.) was engaged in this study and details are described following the Guidance for Reporting the Involvement of Patients and the Public short form (Supporting Information S1: Appendix 4).She informed protocol development and provided feedback on various aspects of the project, including data extraction and interpretation.We held regular monthly meetings to discuss the study progress and ensure that the patient's perspective was considered throughout.
We codeveloped a terms of reference a priori to document details of engagement (e.g., expectations, project goals).Our patient engagement plan was informed by INVOLVE's seven Core Principles of Engagement 25 and the CIHR SPOR Patient Engagement framework. 1Recognition included coauthorship and financial compensation.Our financial compensation strategy was guided by the SPOR Evidence Alliance Patient Partner Appreciation Policy, 26 which was discussed and approved by the patient partner.In addition to the patient partner, we also sought patient feedback by presenting to a hospital-associated patient partner council.

| Search results
We screened 370 documents identified by the literature searches from previous studies) (Figure 1).A full list of identified documents can be found in Supporting Information S1: Appendix 5.

| Recommended reimbursement practices and nonfinancial methods of compensation
The majority of documents recommend that patient partners be reimbursed for expenses associated with their engagement (89%, n = 58).Within these, key costs identified included: covering
The recommended monetary value of financial compensation varied and was associated with the level of engagement and specific activities (Figure 2).Twenty-one guidance documents suggested that patient partners should be offered a minimum of $19/h (USD) for 'one-time' engagements or participating in consultation exercises, such as providing feedback on project proposals.In contrast, the median recommended monetary value for compensating patient partners holding positions on advisory committees was $38/h (USD).
Additionally, one guidance document recommended using a Fair Market Value Calculator, which adjusts for patient partner expertise and experience, to determine the monetary value of financial compensation. 27Two organisations implemented caps on the annual income offered to patient partners ($228 and $1141 USD; Supporting Information S1: Appendix 6). 28,29venteen documents (27%) provided guidance tailored to specific populations, including youth (n = 7), Indigenous peoples (n = 7), and individuals with disabilities (n = 3) (Supporting Information S1: Appendix 7).However, the majority of the included guidance focused on logistical aspects of financial compensation and the need to remain flexible to meet the needs of specific populations.For example, several documents highlighted the importance of offering cash to children or individuals affected by homelessness as they may not have bank accounts to deposit cheques.

| Benefits, challenges, barriers and enablers to patient partner financial compensation
We identified reported benefits or challenges of financial compensation in 27 documents (  (2) offers a tangible method to demonstrate patient partner appreciation (n = 8).Two key reported challenges to financial compensation were budgetary limitations of research projects (n = 5) and lack of institutional procedures (n = 5).

| Items to consider when offering financial compensation to patient partners
We identified reported items to consider when offering or accepting  The negative impact of having too many choices has been supported by 'the choice overload hypothesis', which suggests that when individuals are presented with too many options, they may become overwhelmed and find it more difficult to make a decision. 30e scarcity of resources addressing compensation for patient partners from underrepresented groups could also contribute to the perception of a lack of guidance. 8,16This is especially concerning as a key proposed benefit of financial compensation is the engagement of underrepresented populations.For example, in interviews with Indigenous patient partners and researchers regarding patient engagement in research, valuing patient partner contributions was identified as one of four key pillars to success. 31Specifically, compensation bolstered Indigenous patient partner confidence in being involved.However, the approach to offering financial Comprehensive synthesis of financial compensation recommendations (i.e., monetary value) across guidance and policy documents.Further details can be found in Supporting Information S1: Appendix 5.
T A B L E 3 Reported benefits, challenges, barriers and enablers of patient partner financial compensation.

Theme Number of studies
Benefits (n = 23) Financial compensation supports the inclusion of diverse perspectives 18 Tangible method to demonstrate patient partner appreciation and supports a sense of equality among team members 8 Removes power imbalances among team members 4 Support patient partner commitment to the project and long-term engagement 2 Benefits patient partners financially 3 Challenges (n = 5) Financial limitations and institutional procedures (e.g., patient engagement is not an eligible expense) can challenge ability to compensate patient partners 5 Financial payments can jeopardise disability or social security payments or impact income tax rates 3 Loss of autonomy associated with financial compensation 2 compensation needs to be tailored to the patient partners engaged. 32 the case of Indigenous patient partners, one network of Canadian patient-oriented organisations recommended to clarify that compensation is a gesture of appreciation rather than a transaction for their time.4 This is important as the latter could suggest the purchase of Indigenous knowledge, which cannot be commoditized by a person or institution.4 Despite these intricacies of partnering with specific populations, we identified a paucity of documents with guidance in this regard.At this time, we recommend that research teams carefully consider the distinct needs of diverse patient partner populations and codevelop compensation strategies that are attuned to their beliefs and requirements.
Notably, a few guidance documents discussed challenges to offering financial compensation to patient partners.One crucial item to consider (raised in only 15 documents originating from Canada and the United Kingdom) was the potential impact that financial compensation may have on existing income streams.Financial compensation, in the form of cheques or cash, is considered taxable income if the monetary amount exceeds a specific value.For instance, in Canada, compensation of $500 (CAD) or more per year is considered taxable income. 33rthermore, if patient partners accept payment from engagement, it can interfere with eligibility for disability payments or sick leave.
Additionally, receiving financial compensation may involve collection of personal information such as home address or social insurance number.Researchers must ensure that patient partners fully understand these implications of financial compensations to avoid exposing them to undue risk.Additional items to consider are outlined in Supporting Information S1: Appendix 8.
While our scoping review provides a comprehensive overview of available guidance around patient partner financial compensation, limitations must be noted.First, Overton is a relatively new database but, despite its novelty, evidence exists to support its validity and value in identifying relevant guidance documents. 34Additionally, we worked with an information specialist to verify our search strategies and supplemented the Overton search by searching the grey literature.Second, our search is limited to publicly available guidance and policy documents.Because of this, publicly inaccessible organisational or institutional policies are not accounted for.Lastly, literature searches were conducted several months ago and identified guidance may have been updated.The purpose of this review is to provide an overview of compensation recommendations, not to be used as a guidance document.Thus, we encourage researchers and institutions to identify the most recent versions of local guidance or policy when developing a compensation strategy.

| CONCLUSION
We identified an abundance of publicly available documents to support the development of patient partner compensation strategies.This stands in contrast to our previous survey results that noted a perceived lack of guidance or policy to support patient partner compensation.This suggests that there may be a lack of awareness of existing guidance among researchers, or that existing guidance does not meet the needs of researchers.Future research to identify and address key barriers and challenges of patient partner compensation should be explored.All included documents recommended offering nonfinancial compensation to patient partners and the majority (95%) recommended offering financial compensation.Indeed, we did identify discrepancies and gaps that may contribute to a perceived lack of guidance on this issue.We suggest that our results underline a need to create consolidated guidance that identifies core items to consider in compensation strategies and should include consultation with patient partners to ensure that guidance responds to their needs and preferences.The identification of core items may help improve the implementation of patient partner compensation strategies across diverse research groups.

(
Overton, Google, Google Scholar) and 17 documents identified by the previous systematic review and survey study.Sixty-five documents met full eligibility criteria (54 from the literature search and 11

(
ACCORDS)-Partnering with youth, families, & patients in research a standard of compensation for youth, family, and patient partners BC Mental Health and Substance Use Services (BCMHSUS)-Patient and family engagement framework x BC Mental Health & Substance Use Services (BCMHSUS)-Patient and family partner handbook x x National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care East of England-Patient and public involvement (PPI) in research handbook Newfoundland and Labrador's Support for People and Patient-Oriented Research and Trials Unit-Patient partner appreciation-NL SUPPORT and quality of care Hoens-Patients as partners in research: there is plenty of help for researcher x Smith-Patients as research partners; how to value their perceptions, & Medicaid Services (CMS)-Person and Family Engagement Toolkit (PFE) a guide for measure developers x National Institute for Health Research (NIHR) INVOLVE-Policy on payment of fees and expenses for members of the public actively involved with INVOLVE x x Belgian Health Care Knowledge Centre-Position of KCE on patient involvement in health care policy

4 |
DISCUSSIONWe identified and synthesised publicly accessible guidance documents on patient partner compensation, both nonfinancial and financial methods.All documents recommended offering nonfinancial compensation and we identified 12 unique methods including coauthorship, providing training opportunities and facilitating patient partner attendance at conferences.We also found consistent recommendations that patient partners need to be reimbursed for any expenses incurred from engagement, including travel or accommodations.The majority of guidance also suggested financially compensating patient partners for their contributions to research (e.g., through honoraria) and none advised against financial compensation.The recommended monetary value of compensation varied by organisation, with most recommending linking the amount to the specific role, level of engagement and time commitment of the patient partners.While conclusions from our previous systematic review16 and survey study 8 highlighted lack of guidance as a key barrier to financial compensation, our scoping review findings counter this perceived notion by presenting several publicly available guidance documents.Importantly, none of the identified guidance or policy documents provided recommendations on how to implement guidance at an institutional level and rarely provided any details on how documents were developed.Despite these areas of consensus, we observed discrepancies between documents that could present dilemmas for researchers seeking guidance.For example, the only guidance document that recommended using the Fair Market Value Calculator, which considers patient partner expertise and experience level to determine the T A B L E 2 (Continued) offered as a token of appreciation.b Gifts or gift cards (for grocery stores, restaurants, retail stores, prepaid visa gift cards etc.) are considered financial compensation when the value is informed by a formal conversion (i.e., 2 h of work at $25/h = $50 gift or gift card value) or patient partners decide that they want to receive payment in the form of gifts or gift cards.cDocuments that recommend offering financial compensation, but do not recommend a specific method of offering financial compensation.monetaryvalue of compensation, originated from the United States.27However, six Canadian guidance documents recommended against such calculators and suggest that monetary value should reflect patient partner responsibility level and time commitment.These inconsistencies are also observed between guidance originating from the same country.For instance, we identified 17 Canadian guidance documents that provided specific recommendations for financial compensation.Twelve recommended offering patient partners $25 (CAD) per hour, two recommended offering patient partners $25-$50 (CAD) for participation in a half-day meeting (up to 4 h of work), one recommended minimum wage ($15.50[CAD]) per hour and the remaining two did not recommend specific monetary values.Similarly, Canadian guidance documents varied widely in recommendations for nonfinancial compensation.While it is reasonable that different research networks develop unique compensation guidance documents in their local context, there may be challenges associated with having various guidance documents.
).The two most commonly reported benefits were that financial compensation: (1) supports the inclusion of diverse perspectives by enabling individuals from different socioeconomic backgrounds to be engaged in research (n = 18); andT A B L E 1 T A B L E 2